Polio Place

GOALS AND LEADERSHIP
WHAT ARE THEY?
WHY DO IT ALONE?
WHO NEEDS THEM?
WHO CAN BENEFIT?
IS OUR GROUP NORMAL?
EN ESPAÑOL

GOALS AND LEADERSHIP
The goal of a support group is to empower its members with the tools necessary to make adjustments needed to continue a life of dignity and independence. Contrary to the image sometimes portrayed in the popular media, healthy support groups are not “pity-parties” and do not promote the idea that “misery loves company.”

During the original illness, many polio survivors were hospitalized for extended periods of time and established an esprit de corps. After successful rehabilitation, the same survivors lived active, integrated lives. Many of today’s successful support groups have rekindled this sense of belonging to a unique group. Also contributing their perspective to support groups, however with some hesitation or even resistance, are individuals who never were a part of a group based on having polio or a disability.

SUPPORT GROUP(S):

• Share a common health concern.
   
• Govern themselves and their agenda with success dependent on each member’s feelings of ownership.
   
• May use professionals as resource persons but not as leaders.
   
• Provide non-judgmental emotional support.
   
• Gather and share accurate and specialized information.
   
• Have membership which is fluid; newcomers are helped by veterans and become veterans who may outgrow the need for a group.
   
• Have a cause and actively promote that cause.
   
• Increase public awareness and knowledge by sharing their unique and relevant information.
   
• Charge small or no dues for involvement and typically struggle to survive (Laurie & Headley, 1988).

Support groups provide a forum for people to learn from each other about how to enhance the quality of their lives (Koop, 1992). Historically, support groups related to a common health condition developed to help people resolve problems with bureaucracies. For this reason, groups are encouraged to operate with minimal structures and rules. Spending excessive time on organizational details detracts from the primary goals of providing personal support and advocating for systems’ change

Successful support groups promote “personal empowerment to overcome personal adversity” (Koop, 1992) by encouraging members to become active, assertive managers of their health care, challenging attitudes of helplessness, hopelessness, and victimization. Successful groups create a confidential environment for people to share their feelings safely. Healthy groups balance a time for “me,” a time for “us,” and time for “you” (Koop, 1992).

Communication is vital in a support group. Members should be encouraged to own their ideas and reactions by using “I” statements, such as “I think … I feel … I suggest … .” Participants should avoid speaking for the group without consultation, generalizing by stating, “all polio survivors …,” or telling others what to do, such as “you should … .”

Equally important is listening to whoever is speaking by not interrupting or engaging in cross-talk (Ziegler, 1996). Sometimes distressed members digress on tangents and tell detailed stories rather than staying focused on the topic. To minimize these situations, groups should develop ground rules for the meeting time and recognize the limits of the group’s role by encouraging persons who experience continuous or intense distress to seek professional assistance.
  
Effective leadership is also vital. Many groups function successfully with co-leaders or a committed core team.

EFFECTIVE LEADERS:

• Acknowledge members’ ideas and seek suggestions and feedback.
   
• Consult with the group about major decisions and respect the group’s consensus.
   
• Request assistance from members.
   
• Refer to the group as “our” not “my.”
   
• Maintain an atmosphere of respect and order.
   
• Arrange for reputable, skilled speakers to present topics of interest.
   
• Obtain and offer names of ethical, knowledgeable professionals and service providers.
   
• Model self-acceptance and responsibility for their own health and well-being.
   
• Ensure that individuals who want to speak have an opportunity.
   
• Respond to the expression of emotion, tension, and conflict openly and with sympathy.
   
• Offer feedback but avoid authoritative directives by using “I suggest ...” statements, and intervene competently when appropriate.

Survivors join a support group for different reasons, voluntarily attend events, and leave the group when they choose.

Excerpt from: Maynard, F.M., & Headley, J.H. (Eds.) (1999). Handbook on the Late Effects of Poliomyelitis for Physicians and Survivors. Saint Louis, MO: Gazette International Networking Institute, now Post-Polio Health International.

WANT TO KNOW MORE?
PHI's Support Group Philosophy, Guidelines & Resources

Leadership Series, a resource for support groups leaders

WHAT ARE THEY?
Gini Laurie, Missouri

Polio support groups, like all other self-help groups, have a common health concern, govern themselves, provide emotional support, gather and share specialized information, increase public awareness and knowledge, are nonprofit and voluntary, charge small or no dues, and are constantly struggling to survive.

Sharing with other survivors in support groups is the essential psychological support needed to make lifestyle adjustments when dealing with the late effects of polio. The comfort in the togetherness that members extend to one another is essential in the aloneness of our mobile, urban society of small and scattered families.

Support groups are successful because they offer real relief from isolation and fear. They offer experiential knowledge and practical coping skills, not only for members but often for their spouses and families. They provide rare opportunities to learn from positive role models - those who have been there.

There is great variety in polio support groups. Some meetings are structured, others casual. Some have achieved nonprofit status. Some meet in each other's homes or by phone or mail; others meet in independent living centers, rehabilitation centers, churches, hospitals, senior centers, libraries or local March of Dimes or Easter Seal offices. Some have asked one or several of these organizations to provide photocopying or postage as well as meeting places; others are totally self-sustaining. Some have co-sponsored valuable local and regional conferences with their local organizations.

To seek help or not to seek help from local organizations is a dilemma for many support groups. If support groups work with local organizations, they must work out a collaboration that is mutually beneficial since all are part of the helping systems in a community.

If support groups work with local'' organizations, the groups must lead; the organizations must follow.

Total independence is the surest way to remain true to the purpose of a support group - to provide mutual support. Collaboration is an alternative if the support group maintains ownership and autonomy.

© Post-Polio Health (ISSN 1066-5331), Vol. 4, No. 4, Fall 1988

WHY DO IT ALONE?
Paul J. Rau, South Carolina

Many polio survivors who recovered from acute polio at an early age apparently learned a positive mental attitude. As a prerequisite to accepting the pain of recovery, a positive attitude was part of the overcome philosophy – "I must do it alone."

Also, a special bond of trust was established between the polio survivor and the attending physician and between the survivor and family members who assisted in treatment.

When these pioneers in rehabilitation recovered from the initial paralysis and entered the mainstream of society as independent adults, many effectively hid or denied any residual effects.

Years later as reports on the late effects of polio began to appear, they were faced with many new problems and unanswered questions.

Where can I find a physician who will be able to renew my original confidence in the physician/ patient relationship?

Am I at fault for my current problems by neglecting my health which was such an essential part of my early life?

I have remained independent and have not asked anyone to do anything for me the past 30 to 40 years. How do I ask for help now?

Can I get help from my family when the relationships have changed from parents and siblings to spouse and children?

Support groups can provide some of these answers. Meetings are a means of interacting with health care professionals, social service agencies, and most important, other polio survivors. All will benefit from the mutual exchange.

This first step towards the self-help movement will not be easy for someone taught to "do it alone." Some survivors may need to adjust their philosophy of life to "You alone can do it, but you can't do it alone."

Paul J. Rau is the husband of a polio survivor. 

© Post-Polio Health (ISSN 1066-5331), Vol. 4, No. 4, Fall 1988

WHO NEEDS THEM?
Mary Ann Hamilton (polio survivor and ventilator user), Colorado

Our support group had been meeting for several months before Will appeared. Trembling all over, he pulled up a chair and plopped a black notebook on the table in front of him. When he introduced himself, he told us (perhaps warned us), "My doctor told me that I have more information about post-polio syndrome in this notebook than any doctor can find!" As his bony finger jabbed at the fat book, it was obvious his courage was failing. That full notebook held no cure.

He looked around the circle of support and quietly said, "Before I came today I was contemplating suicide. Something happened recently that changed my mind and brought me to these meetings." Our personal fears were shelved. Will had our attention.

"I was driving home from a doctor's appointment. It was snowing, one of those heavy spring storms. I stopped and watched the red signal light swing violently over the intersection, but my mind was recalling my visit with the doctor who couldn't diagnose my fatigue, the feeling of weakness engulfing me."

Sensing we understood his fears, he continued, "Through the blinding snow I saw a bird huddled in a nest cupped in the light. I watched the bird through two turns of green as it clung to the nest while being whipped by blasts of blowing snow.

"I drove on and thought about that little bird which possessed the will to survive, even in such a precarious perch. Perhaps I could find the will to fight – to hang on."

At a recent support group meeting we were going around the circle giving "Atta Boy, Atta Girl" reinforcements. Will told us, "I couldn't stop talking that first day. It was like a dam had burst and the words kept pouring and pouring out of my soul. You were listening and caring. I don't know what I would do without your support."

Who needs them? All of us who share the same fear of being out of control of our plans, our dreams, our quality of life. All of us who grow exhausted vainly trying to halt or reverse the changes brought on by this echo from the past.

We can learn from each other. Each of us has learned a valuable lesson we can share. With new support, the "Wills" of us can survive this confrontation with an old battle.

© Post-Polio Health (ISSN 1066-5331), Vol. 4, No. 4, Fall 1988

WHO CAN BENEFIT?
Margaret E. Backman, PhD, New York

Leaders of post-polio support groups often feel frustrated that a large majority of those on their mailing lists do not come to the group meetings. More important, many leaders fear that these nonattenders are manifesting "serious denial" and may not be doing what is in their best interest. Although in many cases denial may be operating, it is not necessarily self-destructive and often is an appropriate coping mechanism – putting aside disturbing thoughts and allowing one to move on with one's life.

The low level of participation in support groups is not endemic to the post-polio population. Research with those with other medical conditions suggests that a minority of people choose to attend group sessions.

Reasons for Leaving or Not Joining a Group
"It depresses me being with people who are sick." "I prefer not to dwell on my illness." "It reminds me of when I was in the convalescent home; I've had enough of that." These are only some of the reasons given for not wanting to be in a group. Individuals have different coping strategies, and they differ in their capability and need for self-care and information.

A certain amount of support and information is needed; however, some people may be getting as much as they can handle. "Information overload" can be as stressful as not knowing what is going on. Some people prefer to be informed about the timing and the nature of an aversive event, while others prefer to be distracted from knowing, particularly if the information would be threatening.

Matching the amount of information given to a person's preferred coping style seems to the the best strategy. "Confronters" show less stress when given the requested information, and "avoiders" show less stress when given only the minimum information needed to take care of themselves. Generally speaking, the best guide would be to listen to a person's request for information and support.

Some support groups move from being supportive or educational to a more psychodynamic mode, where participants are encouraged to talk about very disturbing feelings and memo larries. Many polio survivors would like to forget what happened to them. They also wish to delay thinking "prematurely" about the difficulties they may have to face in the future. Some are not ready to be confronted or to share their deepest fears - at least not "in public." They may be afraid that they will not be able to cope emotionally. Thus they avoid group meetings because they have no control over what might be said or asked of them. In such cases, avoidance or denial may be appropriate coping mechanisms.

Generally speaking, avoidance (or denial) is better than approach (or confrontation) if the situation is not in a person's control. If there is some possibility for control, however, a more direct approach strategy is better, because it allows the person to take advantage of opportunities.

Perception, however, plays a major role here. Polio survivors may feel that the present state of knowledge and treatment is uncertain and perceive their current situation as uncontrollable. They may feel that the help available is very limited, and discussion of their condition only stirs up what they consider to be unnecessary fear, anger, and frustration. By using avoidance and denial, they reduce their anxiety and possible depression.

For those who cannot tolerate group sessions, written material in the form of newsletters, educational pamphlets and books may be a preferred route for learning about the experiences of others and for obtaining information related to their condition. By this means they can have more control. They can choose to read it now, later, in small amounts, or never.

Those who are dealing with strong emotional reactions and those who need to remain in some control may find individual psychotherapy preferable to group participation. In individual therapy they can have more control over the pace at which they confront their fears and frightening memories. They can also maintain their privacy, something dear to them after years of hospitalization and medical treatment.

There are other reasons that may cause people to avoid support groups. For one, they may be getting emotional support elsewhere, from family, friends, professionals or religion.

Factors related to the group itself may play a role. Some may not feel comfortable with the leader or other group members. For example, there may be those who blame all their life problems on polio and attend group sessions for emotional support independent of polio. The enormity of their emotional problems and their extreme neediness may interfere with the group processes, alienating and frustrating other members and causing them eventually to leave the group.

People who had polio when they were infants have concerns that differ in some respects from those persons who contracted the disease when they were adolescents or adults. The former group may have a greater need to find out what happened to them, since they were too young to understand or to remember. Now they hope to learn through the experiences of others.

Those who were older have more vivid memories of contracting the illness, of stays in convalescent homes and hospitals, of unpleasant experiences with "helping" professionals and treatments. They may not be so eager to relive these memories by talking about them with others.

The severity of disability resulting from polio may play a role in assimilation into a group. Some polio survivors were left with a less serious or less visible disability. They may feel they do not need the group support, whereas others may feel that those who are more disabled may not take their complaints seriously (and indeed this can happen in groups).

Also, being with those who are more disabled may be too frightening to those who have lived most of their lives with little or no disability and now are facing the possibility of becoming more seriously disabled.

Alternatives and Approaches for Support Group Leaders

• Recognize the differing needs and coping styles of polio survivors. Periodically survey your membership for their ideas and evaluations of your services.
   
• Be clear about the objectives of your group meetings. Remember group dynamics are not for everyone, and some may prefer one type of group format over another (support, educational, cognitive, behavioral, psychodynamic). Often the more homogeneous the group the better it functions.
   
• Make referrals for individual psychotherapy when you feel people may be harming themselves through "serious denial" or have other serious emotional problems. Do not be afraid of losing control by making outside referrals or sharing information. You will be respected for being well-informed and responsible.
   
• Conceive of the support group more broadly, perhaps as a network or a club with the support group being one part (including a speakers series, a newsletter, phone networking, a referral service for medical and psychological care). Some may not need your help right now, but should their situation change, they will know that le the services are there.

Margaret E. Backman, PhD, is a retired psychologist.

© Post-Polio Health (ISSN 1066-5331), Vol. 4, No. 4, Fall 1988.

IS OUR GROUP NORMAL?
Ruth Wilder Bell, PhD, Maryland

When support group leaders share experiences and describe their support groups, it quickly becomes apparent that a separate and unique personality exists for each group. Group theorists use the term "syntality" to describe for a group what the term "personality" describes for an individual. And, just as individuals progress through relatively discrete developmental stages, each with its own growth-producing task to be accomplished, groups too pass through developmental stages on the way to becoming a mature group.

An awareness of the stages of group development and the work to be accomplished at each stage is useful to support group leaders as they facilitate effective group functioning.

Overview of Group Stages
Individuals are attracted to groups when they believe that they can meet their needs and achieve specific goals better in the group than individually. However, to become involved with a group means a willingness to be identified with that group and to risk closeness with other group members.

Closeness, a central theme of group life, increases as a group progresses through the developmental stages. While there are multiple theories of group development, all theorists describe similar characteristics of a group as it deals with intimacy in progressing from a young to a mature group. The categories used by the Boston University School of Social Work (Bernstein 1965, 1973) are those used in the following discussion. The five stages of group development are:

• pre-affiliation
   
• power and control
   
• intimacy
   
• differentiation
   
• separation
   

Pre-affiliation. This first phase is characterized by what psychologists term "approach-avoidance behavior. That is, individuals at brie moment seem involved and ready to make a commitment to the group and at the next moment, they withdraw and may not seem interested at all. Attendance may be sporadic, reflective of the general ambivalence regarding identification with other members of the group or with the goals and activities of the group. The role of the leader during this phase is to allow and support this "cautious arm's length" exploration while at the same time patiently inviting trust and involvement.

Power and Control. During this stage, members who have now resolved their ambivalence about involvement in the group begin to make arrangements to handle the work of the group. The leader is seen as the one holding the power and is still held responsible by the members for the group's success. Jockeying among the members for favor and attention from the leader is characteristic member behavior. An effective leader, however, does not respond to the competition for attention and treats all members as equals encouraging them to take increasing responsibility for the success of the group. As this stage closes, members have made a significant investment in the group and have accepted some responsibility for the group's outcomes.

Intimacy. Group cohesion and a sense of belonging flourish during the third stage. The group is now seen as a safe place in which feelings can be expressed and new experiences tried. The group looks less and less to the leader as a source of gratification or for solutions to problems. Members increasingly accept and share responsibility for group functioning and are able to carry out the work of the group.

Differentiation. During this stage, the growth of closeness and the level of intimacy between members that became apparent during the preceding stage continues. There is increasing recognition and acceptance of individual needs. A unique situation has been created in that while the group is cohesive with its own personality and expectations for members, the integrity of individual members is fully respected. The leader is needed less and less and the group increasingly runs itself.

Separation. Separation occurs when the group has met its purpose and the members are ready to move on, taking with them what they have learned from the group. As members prepare to leave the group they may revert to old behaviors, looking once again to the leader for direction. An appropriate role for the leader is to "let go," encouraging members to review both the group's accomplishments and what they as individuals have learned from the group. Particularly useful is a discussion of how experiences in the group can be transferred to new situations.

Implications for Post-Polio Groups
Guiding a support group through these stages, mobilizing the strengths that come with the cohesion and closeness of the later stages is no easy matter. A characteristic of support groups which makes the task more difficult is that while there may be a core of members who attend regularly and as such are the "culture bearers" of the group, there is also a pool of people who cycle in and out, perhaps not having been able to resolve their initial ambivalence about attending. They need to be caught up or reoriented each time they come. And at any meeting there are likely to be those who are attending for the first time and aren't sure what the group is about and whether they even want to participate.

These three groups, the core members, those who cycle in and out, and the newcomers, are in different places emotionally. It is the leader's task to respect their need to be close or not close and set the stage for an environment in which individual differences are respected and individual needs can be met.

A few suggestions to help create such an environment are:

• Have someone available to greet newcomers, provide introductions and a brief orientation to the group.
   
• Encourage core members to discuss what it was like for them when they first began attending. Hopefully, this will encourage sensitivity toward those who are not ready for the same level of intimacy they are.
   
• Watch new members, or those who attend sporadically for signs of uncomfortableness if the discussion involves significant sharing.
   
• At the end of the meeting the leader might speak privately to these folks, letting them know that they will not be pressured to share.
   
• Respect the right of members to attend at intervals, depending on their need and readiness for the group. The leader can express interest in these members by making arrangements for another member to call periodically just to say "Hello." Delegating to another member conveys the notion that members share responsibility for the group. It is not the leader's job alone.
   
• Begin each meeting with a "check in" time, a time when members catch up with each other since the last meeting. Because sharing is voluntary, it protects those who are not ready to participate, but also communicates that the meeting is a safe place for members to share with each other, should they desire to do so.
   

There are many other things that a leader and the members can do to provide for an environment in which needs can be met. It might be interesting to have a discussion with the entire group about ways the group can meet the needs of those who are at different levels of intimacy and identification with the group. Such a discussion communicates a sense of shared responsibility for the life of the group and, in fact, in and of itself facilitates the group's growth and development. Time spent nurturing the group as a whole, as well as the individuals in the group, is time well spent.

Reference
Bernstein, S. (Ed.). (1976). Further explorations in group work. Boston: Charles River Books.

© Post-Polio Health (ISSN 1066-5331), Vol. 4, No. 4, Fall 1988

LOS GRUPOS DE APOYO
El propósito de un grupo de apoyo es poner en manos de sus miembros las herramientas necesarias para realizar los ajustes que les permitan continuar una vida digna e independiente. Contrario a la imagen que usualmente se presenta en los medios de comunicación, los grupos de apoyo en salud no son “grupos de compasión” y no promueven la idea de que “la desgracia ama la compañía”.

Durante la enfermedad original, muchos sobrevivientes de polio fueron hospitalizados por períodos extensos de tiempo y establecieron una identificación entre ellos, un esprit de corps. Después de una rehabilitación exitosa, los mismos sobrevivientes vivieron vidas activas e integradas. Muchos de los grupos de apoyo exitosos de hoy en día han vuelto a encender esa sensación de pertenecer a un grupo único. Por otro lado, aunque con cierta indecisión, e incluso resistencia, quienes nunca pertenecieron a un grupo cuyo fundamento estuviera basado en el hecho de haber tenido polio o de tener una discapacidad, también contribuyen con los grupos de apoyo desde su propia perspectiva.

Los Grupos de apoyo…

• Comparten un problema común de salud.
   
• Manejan su propia agenda y se gobiernan a sí mismos exitosamente, dependiendo de la sensación de pertenencia de cada miembro.
   
• Pueden usar a profesionales como recurso aunque no como líderes.
   
• Proporcionan apoyo emocional sin juicios.
   
• Recolectan y comparten información especializada y correcta.
   
• Tienen una membresía fluida; los veteranos ayudan a los nuevos miembros y, éstos, a su vez, se convierten en veteranos que pueden, con el tiempo, dejar de necesitar pertenecer al grupo.
   
• Tienen una causa, y promueven activamente dicha causa. Aumentan la comprensión y el conocimiento público, compartiendo su información única y relevante.
   
• Cobran, o no, pequeñas cuotas por la participación y típicamente se esfuerzan para sobrevivir.
   

Los grupos de apoyo proveen un foro para que las personas aprendan las unas de las otras acerca de cómo mejorar la calidad de sus vidas. Históricamente los grupos de apoyo se relacionaban con una condición común de salud, y se desarrollaban para ayudar a las personas a resolver problemas con las burocracias. Por esta razón, se estimulaba a los grupos a operar con estructuras y reglas minimalistas. Dedicar demasiado tiempo a los detalles organizacionales distrae de los objetivos primarios de proveer apoyo personal y luchar por cambios en el sistema.

Los grupos de apoyo con éxito promueven “el empoderamiento personal para vencer la adversidad personal,”estimulando a sus miembros para que sean administradores activos, asertivos del cuidado de su salud, combatiendo las actitudes de víctima, inutilidad y desesperanza. Los grupos exitosos crean un ambiente confidencial para que las personas puedan compartir sus sentimientos con seguridad. Los grupos sanos proveen un balance de tiempo para “mi”, para “nosotros”, y para “ustedes”.

La comunicación es vital para un grupo de apoyo. Debe estimularse a los miembros para que tengan sus propias ideas y reacciones, usando frases que comiencen con “yo”, tales como “Yo pienso…, yo siento…, yo sugiero…” Los participantes deben evitar hablar en representación del grupo sin antes consultar. Tampoco deben generalizar diciendo “todos los sobrevivientes de polio…,” o diciéndole a los demás lo que deben hacer como “usted debe…”.

De igual importancia es escuchar a quien le habla, sin interrumpirlo ni desviar la conversación en otras direcciones. Algunas veces, los miembros se desvían tangencialmente y narran historias detalladas, en lugar de mantenerse enfocados en el tópico. Para minimizar estas situaciones, los grupos deben desarrollar reglamentos para las reuniones y deben reconocer los límites de los roles de cada uno en el grupo, incentivando a los miembros que experimentan angustia o aflicción continuadas o intensas a buscar asistencia profesional.

El liderazgo efectivo es también vital. Muchos grupos funcionan exitosamente con co-líderes [dos o más líderes] o un equipo central comprometido.

Los líderes efectivos:

• Dan reconocimiento a las ideas de los miembros solicitando sugerencias y retroalimentación.
   
• Consultan con el grupo acerca de las decisiones importantes y respetan el consenso del grupo.
   
• Solicitan apoyo de los miembros.
   
• Se refieren al grupo como “nuestro” y no “mi”.
   
• Mantienen un clima de respeto y orden.
   
• Coordinan para que oradores de renombre y credibilidad presenten temas de interés.
   
• Obtienen y ofrecen los nombres de profesionales y proveedores de servicios éticos y que conozcan adecuadamente sus temas.
   
• Moldean la auto-aceptación y la responsabilidad con respecto al desarrollo y el bienestar de todos.
   
• Se aseguran de que los individuos que deseen hablar tengan la oportunidad de hacerlo.
   
• Responden a las expresiones de emoción, tensión y conflicto abiertamente y con simpatía.
   
• Brindan retroalimentación evitando dar directrices autoritarias, usando frases como “yo sugiero…”, e interviniendo competentemente cuando es apropiado.
   

Los sobrevivientes se unen a un grupo de apoyo por diferentes razones, asisten a eventos de forma voluntaria y se retiran cuando ellos así lo deciden.       

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